1. Advanced Cancer
Care Planning
What Patients and Families Need to Know About
Their Choices When Facing Serious Illness
2. ABOUT ASCO
The American Society of Clinical Oncology (ASCO) is the world’s leading
professional organization representing physicians of all oncology subspecialties
who care for people with cancer. ASCO’s nearly 30,000 members from the
United States and abroad set the standard for patient care worldwide and lead
the fight for more effective cancer treatments, increased funding for clinical and
translational research, and, ultimately, cures for the many different types of cancer
that strike an estimated 12 million people worldwide each year.
ABOUT CANCER.NET
The best cancer care starts with the best cancer information. Well-informed
patients are their own best advocates and invaluable partners for physicians.
Cancer.Net (www.cancer.net) brings the expertise and resources of the American
Society of Clinical Oncology (ASCO), the voice of the world’s cancer physicians,
to people living with cancer and those who care for and care about them. All the
information and content on Cancer.Net was developed and approved by the cancer
doctors who are members of ASCO, making Cancer.Net an up-to-date and trusted
resource for cancer information on the Internet. Cancer.Net is supported by The
ASCO Cancer Foundation, which provides funding for cutting-edge cancer research,
professional education, and patient and family support.
3. Advanced Cancer
Care Planning
TABLE OF CONTENTS
Introduction ................................................................................................. 4
About Advanced Cancer........................................................................... 5
Care Options ...................................................................................................................5
Exploring Your Care Options ......................................................................................6
Role of the Family in Making Treatment Decisions ............................................... 7
Palliative Care ................................................................................................................8
Hospice Care ................................................................................................................. 10
Coping and Finding Support Near the End of Life ............................14
Arranging Your Affairs ................................................................................................14
Reviewing Your Life .................................................................................................... 18
Religion and Spirituality .............................................................................................19
Questions to Ask About Advanced Cancer ........................................20
Resources .................................................................................................. 22
The ideas and opinions expressed in Advanced Cancer Care Planning do not necessarily
reflect the opinions of the American Society of Clinical Oncology (ASCO). The information
in this guide is not intended as medical or legal advice, or as a substitute for consultation
with a physician or other licensed health care provider. Patients with health care questions
should call or see their physician or other health care provider promptly and should
not disregard professional medical advice, or delay seeking it, because of information
encountered in this booklet. The mention of any product, service, or treatment in this
guide should not be construed as an ASCO endorsement. ASCO is not responsible for any
injury or damage to persons or property arising out of or related to any use of ASCO’s
patient education materials, or to any errors or omissions.
3
4. Introduction
Advanced cancer is cancer that cannot be cured. It may be referred
to as end-stage or terminal cancer. However, incurable does not mean
untreatable. People with advanced cancer continue to have options for
treatment and can maintain a good quality of life.
The American Society of Clinical Oncology (ASCO) is working with
oncologists (doctors who treat people with cancer) and their care teams
to help patients and their families talk about advanced cancer and
identify the best, individualized treatment plan for each patient. ASCO is
the world’s leading professional organization representing doctors who
care for people with cancer. The content in this booklet is adapted from
ASCO’s patient information website, Cancer.Net (www.cancer.net).
This booklet is designed to help people with advanced cancer and their
family and caregivers understand the diagnosis and treatment options,
discuss these options for care throughout the course of the illness, and
find support.
4 INTRODUCTION
5. About Advanced Cancer
A diagnosis of advanced cancer is usually difficult for you and your
family. It may be hard to believe the diagnosis. Or, it may cause anxiety
and uncertainty. However, even if treatment is no longer able to cure or
stop the growth of your cancer, you still have choices for care. Treatment
for advanced cancer includes slowing tumor growth and managing pain
and other symptoms of cancer and cancer treatment.
At this time, it is helpful to talk with your cancer care team to understand
your treatment options and goals of treatment. It is also important to
ask for care that meets your physical, emotional, spiritual, and practical
needs and to know that you will continue to receive care and emotional
support throughout your illness. Your cancer care team may now include
experts in hospice and palliative care to help with these needs.
Care Options
Understanding the types of care available helps you and your doctor
develop a personalized treatment plan that takes into account your
individual needs, goals, and preferences.
Standard treatment. Standard treatment is the current or most
effective treatment available for your cancer, usually based on the type
of cancer, the extent of spread, and any specific cancer markers, genes,
or proteins (such as HER2 for breast cancer). This type of treatment
focuses on directly controlling the disease. Some people with advanced
cancer choose to stop receiving standard treatment (disease-directed
treatment), because it may cause unpleasant or harmful side effects.
Others choose to continue receiving disease-directed treatment,
which may include surgery, chemotherapy, and/or radiation therapy.
Understanding the likelihood of the cancer responding to treatment,
what that response may be (such as shrinking a tumor or slowing
cancer growth), the risks (especially side effects) of treatment, and the
consequences of stopping disease-focused treatment will help you make
this decision.
Clinical trials. A clinical trial is a highly controlled research study
involving people who choose to participate. Clinical trials test new
drugs and treatments to find out whether they are safe, effective, and
possibly better than the standard treatment of care. Participating in a
ABOUT ADVANCED CANCER 5
6. clinical trial may offer a patient with advanced cancer the chance to help
other patients with cancer; or, in some cases, the research may help the
patient directly. If patients are interested in participating in research,
clinical trials should be considered early in the course of treatment and
not considered only as a last resort for a cure.
Palliative/supportive care. Care that manages the symptoms and side
effects of cancer and its treatment is called palliative or supportive
care. Palliative care focuses on helping people with all stages of cancer,
including advanced cancer, live as comfortably as possible for weeks,
months, or years. This type of care, which addresses a person’s physical,
spiritual, emotional, and practical needs, is provided at the same time as
ongoing, curative treatment or on its own. Palliative care also provides
support for a patient’s family, friends, and caregivers.
Hospice/home care. Hospice care is a form of palliative care provided
to patients with cancer who are expected to live six months or less.
The goal of hospice care is to help patients who are no longer receiving
disease-directed treatment and their families cope with the physical
and emotional effects of death and dying. The focus is no longer a cure;
rather, the focus is on ensuring compassionate care that allows for the
highest quality of life possible. Hospice care can take place at home
(home care) or in a specialized center or facility.
Exploring Your Care Options
Having conversations about your
advanced cancer care options is
often difficult. However, these
conversations will give you the
information you need to make
informed choices throughout the
course of your illness. And, having
these conversations early on helps
reduce stress for you and your
loved ones.
Advanced cancer care decisions are personal. Everyone has his or
her own goals for care and for the future. Clearly understanding your
6 ABOUT ADVANCED CANCER
7. diagnosis and all of your treatment options will likely make you feel more
confident in the decision-making process. Remember, no matter which
treatment (or treatments) you choose, you always have the right to
change your treatment plan at any time.
The Role of the Family in Making Treatment Decisions
A person with cancer may have more than one option on how to treat
the disease, and it may be difficult to choose among them. In making
this choice, patients often ask for the opinions of family members. And,
in some cases, family members may disagree with each other and with
the patient on the best choice, creating conflict when they need each
other’s support the most.
If you are involved in selecting treatment, these guiding principles may
help you evaluate the choices:
• Informed decision-making: Does the patient understand the risks of
treatment and the potential consequences of his or her choices?
• Responsive to the patient’s wishes: Are the patient’s wishes openly
stated and being respected?
• Consistent with personal values: Is this treatment in harmony with the
patient’s beliefs and values?
In each aspect, the patient’s viewpoint is considered first. If you are a
person with cancer, you have the right to be heard, the right to change
your mind, and the right to state your wishes and have them respected.
If you are a family member, remember that the patient has asked for
your view because he or she respects your opinion, but various factors
may lead him or her to make a different decision. It is important, even
when disagreements occur, to remember to keep communicating with
each other and to support the patient in his or her choices.
It is also helpful to talk openly about the patient’s priorities in
undergoing treatment. These could range from surviving as long as
possible, regardless of the difficulty of treatment, to maintaining a
specific quality of life, even if that means stopping treatment. If this
is difficult for your family to talk about, ask someone to facilitate this
conversation, such as a doctor, nurse, member of the clergy, social
worker, or counselor.
ABOUT ADVANCED CANCER 7
8. Palliative Care
Palliative care does not cure cancer. Instead, its goal is to improve a
patient’s quality of life by:
Treating the symptoms and side effects of cancer and its
treatment—Medication, physical therapy, rehabilitation, massage,
and a wide range of other therapies are used to manage pain, nausea,
breathlessness, insomnia, and other physical symptoms.
Addressing a patient’s practical needs—Patients receive help
addressing financial and legal concerns, transportation issues,
employment concerns, and more.
Treating a patient’s emotional and social needs—Resources are
provided to address concerns such as depression, anxiety, and fear.
Addressing a patient’s spiritual needs or concerns—Palliative care
experts help people explore their faith and beliefs as they work to
accept the concept of end of life, as well as help with religious
ceremonies or rituals.
Providing support for the patient’s family, friends, and caregivers—
Loved ones receive both emotional and practical support as they work
to cope with the challenges that come with caregiving and the loss of a
loved one.
Any person, of any age, with any type of cancer, at any stage, may
receive palliative care. If you choose to receive palliative care, it does
not mean that your doctor has given up on you or that you have given
up on yourself. Nor does it mean that you no longer have control over
your treatment choices or that you cannot receive disease-directed
treatment if you choose. Palliative care simply aims to eliminate physical
and emotional discomfort throughout your cancer experience so you are
able to focus less on the disease and more on living.
When and where palliative care is given
Palliative care is given as early as possible in the cancer treatment process
and continues through all stages of illness, regardless of whether a cure is
the expected outcome. If you decide to stop disease-directed treatment,
palliative care focuses on managing the symptoms caused by cancer.
8 ABOUT ADVANCED CANCER
9. Palliative care is given in a doctor’s office, hospital, cancer center, long-
term care facility, or your home. Your doctor or a hospital social worker
will help you find palliative care.
Providers of palliative care
Depending on your needs
and goals, several health care
professionals may be a part of
your palliative care team. These
team members may include
doctors, nurses, social workers,
chaplains, dietitians, physical
and occupational therapists,
and grief and bereavement
counselors. The team will work
with you and your doctor to develop an individualized palliative care
plan that meets your specific needs, as well as to adjust the plan as your
needs change. Communication between you and your team members is
important because it helps to clarify needs and expectations.
Benefits of palliative care
Coping with the idea that you have advanced cancer is often difficult for
your family members or caregivers. Through palliative care, they receive
counseling that helps them cope with the situation, as well as help
prepare them for the physical changes and needs that come with the
care of a person with advanced cancer.
Paying for palliative care
Palliative care is often covered by health insurance. Medicaid and
Medicare may also pay depending on the situation. A hospital social
worker can help you explore payment options.
How palliative care differs from hospice care
Palliative care is given at every step of the treatment process and at
all stages. Hospice care is a form of palliative care given to people with
cancer who are expected to live six months or less, regardless of their
age or type of cancer. When the time is right, palliative care specialists
will help you make the transition to hospice care and help you address
the physical and emotional issues that come with that choice.
ABOUT ADVANCED CANCER 9
10. Hospice Care
Patient Story Many people with advanced cancer
Gerald had been living with decide to enter hospice care. The
lymphoma for nearly 15 years, emphasis of hospice care is similar
but it recently became worse and
to palliative care in that it focuses
his current medication stopped
controlling the lymphoma. He on relieving pain and discomfort.
then developed pneumonia, and Hospice care also helps you and
once he recovered from that, your family cope with the emotions
he needed oxygen to help him surrounding the end of life.
breathe. The hematologist met
with Gerald and his family and
Many people with advanced cancer
told them he thought that Gerald
only had a few months longer feel overwhelmed when they are
to live, unless he wanted to try told there is little chance of a cure.
a treatment that would give him Hospice care works to ensure that
six to nine months longer. Gerald you approach the end of life with
and the family decided to go confidence and in comfort, peace,
ahead with the chemotherapy, but
and dignity.
Gerald had an allergic reaction to
it. Because there were no more
curative treatment options and Hospice care providers
Gerald still needed the oxygen, Because of the availability of
the doctor recommended hospice hospice programs and other
care. A social worker helped them home-care services, people with
find an agency that could help
advanced cancer often choose
and arranged to bring a hospital
bed to his home. The hospice where they would like to spend
team helped Gerald and his family their last days. Hospice care most
with his medications and made often takes place at home and,
sure he was getting adequate in this instance, is referred to as
nutrition. Gerald was able to home hospice. Hospice care is
say goodbye to his children,
also delivered in hospitals and
grandchildren, neighbors, and
friends who were so important to private inpatient facilities. The
him. He died peacefully at home cost, availability of caregivers, and
six weeks later. His daughter community resources are factors
said, “Of course we wanted to try to consider when selecting where
everything, but the chemotherapy to receive hospice services.
was so hard on Dad, and we
realized we didn’t want to say
goodbye in the hospital. We were Professionals that may be a part
able to be more of a family when of your hospice care team include
he was at home.” doctors, nurses, home health
aides, social workers, chaplains,
therapists (physical, occupational,
10 ABOUT ADVANCED CANCER
11. and rehabilitation), dietitians, trained hospice volunteers, and grief and
bereavement counselors. These professionals also act as a support
system for your loved ones. Knowing your loved ones have these
resources may help ease your worries about leaving them behind.
Your doctor, nurse, or social worker will help you find hospice care
in your area. Other options include contacting your state or local
department of health to get a list of licensed agencies or researching
online hospice-related organizations that provide resources related
to home hospice care; see the Resources section of this booklet for
additional information.
Quality of hospice care
Some people worry that because they
are reaching the end of life, they will
not receive the same quality of care as
other patients or that their death will
occur quicker in hospice. Hospice care
is humane and compassionate care,
and it does not slow down or speed up
end of life. You will receive the same
quality of care as patients undergoing
curative treatment. The only difference
is the focus of care is quality of life,
not longevity. In fact, people who
use hospice may actually live longer, either because they are more
comfortable or because they have fewer side effects from chemotherapy
at the end of life.
Other patients worry that they will simply be medicated and unable
to make choices or spend their last days as they wish. Your hospice
care team will work with you to determine your goals for end of life
care and develop a care plan that allows you to meet those goals while
keeping you comfortable. Medication is only one part of that plan. Other
therapies, such as music and art therapy, physical therapy, nutrition
therapy, massage, and more, may be used.
Hospice care in the home
In home hospice care, a family member or close friend serves as the
primary caregiver and is responsible for coordinating and/or overseeing
ABOUT ADVANCED CANCER 11
12. most of the patient’s care. Doctors, nurses, home health aides, and
personal attendants will work with you and your caregivers to develop
a plan tailored to meet the unique needs of your situation. They also
regularly meet with you and your caregivers to evaluate your medical
and comfort needs and provide any services—medical or day-to-day
care, such as help with bathing and eating—your primary caregiver is
unable to provide. Hospice professionals are typically on call 24 hours a
day, seven days a week.
Eligibility and costs of hospice care
Hospice care is available when all treatments to cure your cancer no
longer work and you and your doctor are at ease with a treatment plan
dedicated to maintaining comfort. In the United States, acceptance into
hospice care requires a statement by a doctor that the person has a
life expectancy of six months or less. (Hospice care can be continued,
though, if you live longer than six months.)
If your condition improves or your cancer goes into remission
(temporary or permanent absence of symptoms), hospice care is
discontinued and disease-focused treatment may resume.
The Medicare Hospice Benefit covers the costs of hospice care for
people who receive Medicare if they are accepted into a Medicare-
12 ABOUT ADVANCED CANCER
13. certified hospice program. Under Medicare, hospice is primarily
delivered in the home setting by a Medicare-approved hospice provider
and covers:
• Services provided by the doctors
• Nursing visits to the home with 24-hour on-call services
• Medical appliances and supplies related to the life-limiting illness
• Medications to manage symptoms and relieve pain; at most, patients
are responsible for a $5 copayment
• Short-term, acute care, including respite care, either in a hospital
or nursing home. Inpatient respite care is provided to give family
caregivers temporary relief.
• Home health aide and homemaker services
• Supportive counseling
• Spiritual support and counseling
• Nutritional counseling
• Bereavement support for your family
The following services are not covered under Medicare:
• Treatment for the life-limiting illness that is not for pain control and
other symptom management
• Care given by another health care provider that was not arranged
through the hospice program
• Care given by another health care provider that duplicates care the
Medicare-approved hospice provider is required to provide
Medicaid may also cover some home care services. Private health
insurance policy benefits differ from insurer to insurer. A hospital social
worker will help you understand your options.
ABOUT ADVANCED CANCER 13
14. Coping and Finding Support
Near the End of Life
Learning that you have advanced cancer frequently brings about intense
feelings of anger, fear, grief, regret, and other strong emotions. It is
normal to grieve and mourn the loss of your abilities, the loved ones
you will leave behind, and the days you will not have. Talking about your
feelings and concerns with family, friends, and caregivers helps bring
you comfort.
Patients and their families should not be
afraid to express the way they are feeling
to doctors, nurses, and social workers.
The health care team is there to help, and
many team members have special skills and
experience to make things easier for patients
and their families. In addition to providing
emotional support and education, the doctor
may prescribe medications to help address a
patient’s anxiety or depression. Your doctor
may also refer you to a counselor, social
worker, psychologist, psychiatrist, or support
group. Furthermore, patients and their families should be aware that
there are resources available in the community to help.
Along with finding support, this may be the time to begin the process
of identifying your preferences for care, addressing financial and other
concerns, and completing unfinished business. Open communication
with your loved ones and with your doctors and nurses will allow them
to guide you through the necessary steps. More importantly, it will allow
them to serve you well and personalize your care.
Arranging Your Affairs
Although discussing death and dying is difficult and sad, it is
recommended that a person with advanced cancer revise and review his
or her wishes at the end of life with family and health care professionals.
You also may revise your goals and plans as your circumstances or
preferences change. Starting the conversation early strengthens your
relationship with the health care team. For many people, worrying about
14 COPING AND FINDING SUPPORT NEAR THE END OF LIFE
15. Patient Story
Alma was a mother of two in her early 40s when she was diagnosed with
metastatic colon cancer that had spread to her liver and lungs. When Alma
saw the oncologist, he recommended that she undergo chemotherapy. Alma
and her family agreed, and the chemotherapy helped for a couple of months.
But the cancer continued to spread. The doctor told the family there was
another medication to try, so Alma was given another chemotherapy.
However, it dramatically lowered her white blood cell counts, and Alma was
admitted to the hospital. She recovered, and Alma and her family wanted
to try a different chemotherapy option. Her oncologist agreed, but she
continued to have low blood counts and couldn’t keep any food down, so
she was admitted back to the hospital. This process went on for several
more weeks. Alma’s family kept hoping each new drug would get rid of the
cancer and allow Alma to come back home. Alma was getting weaker with
each round of chemotherapy, and she eventually died from an infection. Her
husband was stunned afterwards. He hadn’t realized her condition was so
serious, and he hadn’t been able to prepare the kids for the fact that they
were losing their mother. He later said, “I wish someone could have told
us the real facts about the situation and that additional treatment was not
likely to help. We didn’t know stopping treatment was an option.”
what will happen to their surviving family members is difficult. Planning
ahead to settle legal, financial, and business affairs also allows you and
your family to concentrate on the emotional aspects of your illness and
its effect on your family.
Settling your affairs may include locating and organizing important legal
and financial documents, such as your will, marriage and birth certificates,
social security card, insurance policies, bank statements, and investment
summaries. If you have complicated finances or are concerned about
leaving your family with high medical bills or debts, consider talking with a
financial advisor or social worker. Financial professionals cannot eliminate
bills or debts, but they will help you sort out your finances and lessen the
stress of financial worries for you and your family. Some people also find
it helpful to plan some aspects of their own funeral or memorial service.
This is done with a set of written instructions or by talking with your
family or close friends about your wishes.
An important step for many is to create, or perhaps make changes to,
an advance directive. An advance directive is a legally binding set of
COPING AND FINDING SUPPORT NEAR THE END OF LIFE 15
16. instructions that explains the kind of medical treatment you want and do
not want if you become unable to make those decisions for yourself. An
advance directive provides a way for you to communicate your wishes
to your family, friends, and health care professionals ahead of time to
avoid confusion later on. People who have advance directives know
that their wishes will be respected. Although an advance directive may
be oral (spoken) in most states, an advance directive is less likely to be
challenged if it is in writing. It is a good idea to discuss your advanced
directive with your family to clarify your decisions and the values
underlying them.
Types of advance directives
Living will. This is a written set of instructions outlining your wishes
about types of medical care you may or may not want in order to sustain
life. A living will is also referred to as a Directive to Physicians and
Family. It is used in situations when you have a life-limiting illness and
can no longer communicate your wishes about medical care. A living will
includes statements about:
• Whether you want the medical team to use cardiopulmonary
resuscitation (CPR) and/or artificial life support, such as mechanical
respirators, if your breathing or heart stops. If you are in a medical
setting, such as a hospital or nursing home, and your heart and/or
breathing stops, medical personnel will automatically perform CPR
unless you have a do-not-resuscitate (DNR) order. It is important to let
the doctors and nurses know that a DNR order is in place, especially if
you are transferred to a new facility. It may be useful, too, to remind
your family members so they know of your wishes and are able to help
advocate for you if you are unable to do so.
• Whether you want to receive a feeding tube (artificial nutrition and
hydration) if you cannot be fed otherwise
• Whether you want certain procedures, such as kidney dialysis, performed
Unlike other advance directives that are written and signed by the
individual (such as a living will or a durable power of attorney for health
care), a DNR order must be completed and signed by your doctor or
another health care provider, such as a hospice nurse practitioner. Once
completed, your DNR order is added to your medical record. Living wills
are as detailed as needed to make sure that your desires and wishes
for life-sustaining treatments are honored. A living will also includes
directions about donating organs.
16 COPING AND FINDING SUPPORT NEAR THE END OF LIFE
17. Durable power of attorney for health care. This type of advance
directive designates a person who will make medical decisions for you
if you become unable to make them yourself. The person you appoint
is often referred to as your health care proxy, agent, or attorney-in-
fact and has authority only over medical decisions, not other matters,
such as finances. Any competent adult, age 18 or older, may be a health
care agent. Your health care agent makes decisions about your medical
care after your doctor certifies in writing that you are no longer able
to make your own decisions. Once you choose a health care agent, you
may still make your own decisions about your medical care; your health
care agent will only make decisions once you are unable to do so. It is
important to talk with the person you are appointing as your health care
agent so that he or she knows your wishes.
Patient Story
Myra finished breast cancer treatment two years ago. Recently, the cancer
came back and had spread to her bones. She and her oncologist discussed
the laboratory results and the fact that the cancer was still treatable
but not curable. Ten months into treatment, it stopped working. At that
point, her oncologist informed her that a number of treatment options
existed, and she recommend one option, along with aggressive symptom
treatment, such as managing Myra’s bone pain. At each meeting, they
discussed the joint path of treating the cancer and the symptoms. During
these discussions, Myra’s oncologist told her that, at some point, the
treatment would transition from treating the cancer to primarily treating
the symptoms of cancer.
Three years later, the cancer had spread further. During the next
discussion with her oncologist, Myra was told, “Remember when I told you
that at some time the appropriate therapy would be to focus on symptom
management? Well, this is the time for that. I would like to stop further
chemotherapy and make sure we focus on stopping the bone pain and help
you breathe more easily. I want to have our hospice experts manage your
care. How does that sound?”
Myra agreed, and after a few more months, Myra’s oncologist
recommended transitioning to hospice care at a facility in her
neighborhood where Myra died a few weeks later. Myra’s husband later
said, “Despite the difficulty of the situation, it was made easier when the
doctor helped us understand what would happen at each step of the way.
Myra felt cared for until her last day.”
COPING AND FINDING SUPPORT NEAR THE END OF LIFE 17
18. Once you make an advance directive, you may change it if needed.
Changes are allowed as long as you still have or regain your ability to
make decisions. You will need to notify your health care team if you
make any changes.
Completing unfinished business
As you approach the end of your
life, there may be certain things you
wish to accomplish in the time you
have left. These tasks help bring a
sense of meaning and completion
to your life and may range from
fulfilling a lifelong dream to more
simple experiences, such as re-
reading a favorite book or spending
time with those who are important
to you. Finding peace in important
relationships and saying the things that matter most are also significant
aspects of life completion. There may be conflicts you wish to resolve
or apologies you want to make. You may want to say goodbye to special
people and tell family members how much you love them. If you are able,
you may want to accomplish these tasks in person, or you may want to
pass on a message in writing, by telephone, or through a family member.
It may be possible for you to travel to visit special people or for them
to travel to you. Keep in mind that, despite your best efforts, people
may not respond the way you want them to. Some people may not feel
comfortable visiting you or may be afraid they will say the wrong thing.
You may be comforted by knowing that you have done your best to heal
a troubled relationship.
Reviewing Your Life
It is only natural to want to leave a legacy (evidence that your life
mattered and that you made a difference in the world). Take time to
reflect on and celebrate the events in your life—the things you have
accomplished, the people you have loved, and the individuals and events
that have shaped you. Talk with your family and friends about the times
you have spent together and the memories and events you have shared.
You will not only be honoring memories of the life you shared together
but also creating new memories for them to cherish.
18 COPING AND FINDING SUPPORT NEAR THE END OF LIFE
19. As you review your life, you may want to write down your memories,
record them on tape or video, or ask someone to write for you as you
talk. Talking about or recording your wishes and dreams for loved ones
helps ease regrets about having to leave them and helps them feel
connected to you at important times throughout their lives. For young
children, it may be enormously helpful to leave videos and albums
that remind them of your love and connection. Creating opportunities
to celebrate your life will also offer an opportunity to record happy
moments that your family and friends will cherish after you are gone.
Religion and Spirituality
Many patients with advanced cancer
report that religion and spirituality are an
important part of their lives. For some,
organized religion is a central part of life,
and the support of faith and clergy members
is an important source of comfort at the end
of life. For others, spiritual comfort may lie
in a sense of connection to nature or people.
What matters is finding such comfort,
completion, and peace, which will sustain
hope and meaning. Studies show that
patients who feel spiritually supported have
a better quality of life. Patients and their
families should feel comfortable asking for spiritual support and for help
in finding these resources from members of the cancer care team.
COPING AND FINDING SUPPORT NEAR THE END OF LIFE 19
20. Questions to Ask About Advanced Cancer
Talking about your or your family
member’s cancer diagnosis is
difficult, especially when there is
a lot of information to learn and
there are multiple decisions to
make. However, it is important
to have honest conversations
with your doctor and the cancer
care team about your treatment
plan. Never be afraid to ask for
more information or to express
your opinions, preferences, and
concerns. If your doctor doesn’t have all the answers, he or she may be
able to refer you to other resources.
Use this list of questions to help guide your conversation. You don’t
need to ask every question at first; different questions will be relevant
at different points in your care. It may help to write down your questions
before the appointment and bring a notebook to write down the answers.
Finally, remember that these discussions should happen throughout your
care, not only at the time of diagnosis.
• What is the diagnosis? What does this mean?
• What is my prognosis (chance of recovery)?
• What are my treatment options?
• What is a clinical trial? What clinical trials are open to me?
• What treatment plan do you recommend? Why?
• What is the goal of this treatment? Is it directly treating the cancer or
improving my symptoms, or both?
• Am I healthy enough to undergo the recommended treatment?
• What are the risks and benefits of the treatment you are
recommending?
• Are there other alternatives I should consider?
• How often should we check in about my treatment plan?
• What is palliative care?
• What is hospice care?
• Where can I find support for me and my family?
20 QUESTIONS TO ASK ABOUT ADVANCED CANCER
21. List your questions and write down the responses here:
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QUESTIONS TO ASK ABOUT ADVANCED CANCER 21
22. Resources
Find additional information about caregiving, end-of-life care planning,
grief and bereavement, cancer treatment, and links to patient support and
resource organizations at www.cancer.net.
The following national organizations provide resources about advanced
cancer, palliative care, hospice care, medical decision-making, and other
topics addressed in this booklet. Because programs and services continually
change, visit Cancer.Net to find the most current information.
American Cancer Society Hospice Association of America
www.cancer.org www.nahc.org/haa/
800-227-2345 202-546-4759
American Hospice Foundation International Association for Hospice
www.americanhospice.org and Palliative Care (IAHPC)
800-347-1413 www.hospicecare.com
866-374-2472
CancerCare
www.cancercare.org Jack and Jill Late Stage Cancer
800-813-4673 Foundation
http://jajf.org/home/
Caring Connections from the 404-537-5253
National Hospice and Palliative
Care Organization Medicare
www.caringinfo.org www.medicare.gov
800-658-8898 800-633-4227
877-658-8896 (multilingual line)
National Association for Home Care
Center to Advance www.nahc.org
Palliative Care 202-547-7424
www.GetPalliativeCare.org
212-201-2670 National Cancer Institute
www.cancer.gov
Hospice Education Institute 800-422-6237
www.hospiceworld.org
800-331-1620 National Family Caregivers Association
www.nfcacares.org
800-896-3650
22 RESOURCES
